Sage Bolte is executive director of Life With Cancer and also serves as associate director of psychosocial program for the Inova Health System. She is an internationally recognized educator and speaker on sexual health, intimacy, and relationships among people diagnosed with cancer and other chronic diseases. She conducts lectures, workshops, and training to both patient and healthcare professional groups on the topic of the sexual self and cancer survivorship. Her goal is to help empower patients to reclaim their sexual selves in spite of the many physical and emotional changes they may experience from their cancer diagnosis and to help healthcare professionals feel more comfortable and knowledgeable to assess and address the sexual health needs of their patients.
Listen to the podcast to hear Sage talk about:
- how women diagnosed with metastatic disease can redefine sexual health so they’re fulfilled and satisfied
- tips for women who are having vaginal pain/dryness, including stretching and strengthening exercises
- why it’s important to remember libido starts in the brain, not necessarily the body
- how to start a conversation with a partner about what is pleasurable right now and how what’s desired may change
Running time: 26:33
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Show Full Transcript
Jamie DePolo: Hello, everyone. Welcome to this edition of the Breastcancer.org podcast. I’m Jamie DePolo, the senior editor of Breastcancer.org, and our guest today is Sage Bolte. She is the executive director of Life with Cancer and also serves as associate director of psychosocial programs for the Inova Health System. She is an internationally recognized educator and speaker on sexual health, intimacy, and relationships among people diagnosed with cancer and other chronic diseases. She conducts lectures, workshops, and training to both patient and healthcare professional groups on the topic of the sexual self and cancer survivorship. Her goal is to help empower patients to reclaim their sexual selves in spite of the many physical and emotional changes they may have experienced from their cancer diagnosis and to help healthcare professionals feel more comfortable and knowledgeable to assess and address the sexual health needs of their patients. Sage, welcome to the podcast.
Sage Bolte: Thanks so much for having me.
Jamie DePolo: We’re very excited. Our topic today is sexual health and intimacy for women diagnosed with metastatic disease, which we know from the questions we get on our site is a huge area of interest among our site visitors.
Sage Bolte: Sure. So I think — I don’t want to minimize the experience of metastatic breast cancer and the challenges of being on and off chemotherapy for a long period of time, which can make you feel crummy sometimes. But for some women they feel good enough to have interest in being sexually active and/or interest in maintaining a sexual relationship with themselves or their partner or intimacy. So when we think about the kind of classic definition of who I am as a sexual being or intimate being, a lot of people expect their bodies to be the initiator of interest or the initiator of intimacy and sexual interest in a relationship with themselves or another person. And any time we have a crisis or something like a cancer diagnosis, we really can control some, not all, but some of how we react to that by the thoughts we put in our head and by the way we think or approach that crisis.
So with a metastatic breast cancer diagnosis, one of the things we need to consider is can we think about our bodies as sexual, can we think about our bodies as desiring intimacy or needing touch, and can we think about them as a whole person and as a body rather than this is a sick body, this is a broken body, which is oftentimes what I hear are these negative attachments related to our bodies from women living with advanced disease. So the way we think about our sexual bodies, and again, that means I am a sexual body in spite of the fact that I have metastatic breast cancer or I am a sexual body and I happen to have advanced disease, they can both be true, that I can be a sexual body, I can have intimate needs.
Maybe I need to redefine them. Maybe I need to explore a different way to approach my sexual body. Maybe I need to take a more proactive approach in taking care of the physiological part of my sexual body, but my mind affects the way I see, view, interact with my sexual body. So the way we think and approach it needs to take a more proactive and positive approach rather than a negative and more passive approach.
Jamie DePolo: Let’s just get right into it. After someone’s been diagnosed with metastatic breast cancer, many women feel they’ve lost control of a number of things, including their sex life. I’ve heard you say in a talk that women can control how they think about sex and intimacy while they’re being treated for metastatic disease.
Can you talk a little bit about that because it sounds like if women can control how they think about it, maybe they can kind of change what they’re thinking or, you know, make it a better situation. And kind of going along with that, most women have an idea or a definition of sexual health and intimacy before they’re diagnosed with breast cancer. And then when you get a diagnosis, especially of metastatic disease, it seems like those definitions need to change or maybe the words need to be redefined. So is there a way to do that so women with metastatic disease can be fulfilled and satisfied and be happy sexual beings?
Sage Bolte: Yeah, so I think in general as we age as women, this is also a challenge that we expect our body to do some of the things it used to do when we were younger. And hormones play a huge role in that, that if we expect our body to be aroused when we look at our partner or something that turns us on, that with age and now, complicated by disease or treatments for disease, that may not be the case anymore. So sometimes just even redefining our expectations: So what is it that would bring you pleasure? And how do we approach pleasure with realistic expectations but also a conversation around what can my body do? And oftentimes what happens is there’s one negative experience or just in general a lack of interest in intercourse based on the body’s feelings. Rather than pausing and stopping, we make the assumption that, “Oh, that’s gone, that’s no longer a part of my life, I have no interest in that.” And what we can choose to do is say, “Do I have an interest in having interest? Do I have an interest in being interested? Do I have an interest in being close and intimate with someone, to getting my physical needs met, to getting my emotional needs met?” If the answer to that is yes, then we need to take another approach and ask the question, “What can I do? What does my body feel? How can I get to know this new body?”
And again, I think one of the challenges with advanced disease is, the new body may change every 3 months if treatment changes every 3 months, or it might change every year. And so the permission giving of, “For now I’m going to get to know this new body of mine and its reactions and responses to touch, its reactions and responses to my sensual body and sexual body.” Also introducing the idea that that requires us to do things that sometimes we never have done, which is taking time to get to know our body. I think when our body functions in what we would expect to be normal ways, we take that not for granted, necessarily, but there’s not a whole lot of exploring that goes into it. You know what feels good. You may or may not know what doesn’t feel good, and we just kind of go with it.
When a disease or illness comes into play, it does take… We need to take a step back and take a moment to get to know our bodies again. So that can begin with gentle sensual touch — with self if you don’t have a partner — and sometimes it’s safest to start with yourself just so that you don’t feel the pressure of intercourse or the pressure of performance or the pressure of saying, “I like that or don’t like that.”
So getting to know your body in a sensual way starts with sensate focus exercises, gentle, sensual touch, to take notice of what feels good on my body right now. Does warmth, does cool, does my hands on my collarbone? If I don’t have sensations in my breast, does my collarbone, my neck, my back , my stomach — are there other parts of my body that do get aroused or do feel good to be touched? And then in that same vein, telling yourself, “I desire to feel desire, I desire to be touched, I desire to be connected to my sexual body, again, whether I have a partner or not.”
And that may include exploring, using some toys — so a vibrator or, if you’re not comfortable using a vibrator or your hand, using, again, imagery, things that are sensual and arousing. And again, getting to know — slowing down — and getting to know your body in a sensual way and then getting to know your body in a sexual way, what can feel good now rather than what can’t or what doesn’t — what can? Because again, if we give ourselves permission to explore that, there are actually a lot of things that women with advanced disease find in the time that they give themselves to explore that can feel really good.
Jamie DePolo: So it’s almost like you need to reacquaint yourself with your sexual self. It’s like you’re starting over, almost.
Sage Bolte: Yeah, and you’re starting over with the knowledge of yourself, thank goodness, you’re not starting over being 12 again! But you’re starting over and taking into account the limitations you might have. But then again, are there limitations that can be worked through? If your joints hurt, then maybe you need to think about positions that would not aggravate your joints. Do you need pillows under your hips? Do you need pillows under your knees? Maybe you need to be in a warm bath prior, or maybe you need to be in a bathtub or a shower.
So it is giving yourself permission to work around some of the new physical changes, and then, with the brain piece of again, that expectation of “my body doesn’t feel desire or feel aroused,” it would be using your thoughts and your brain to desire desire and give yourself time and permission to allow your body to respond and rewrite what that may look like. Certainly that may mean that based on maybe physiological issues that you’re having that you don’t necessarily orgasm consistently, but do you need an orgasm for there to be pleasure? And for most women you don’t, that there can be pleasure in touch, pleasure in arousal, pleasure in being connected to another body, pleasure in connecting to oneself.
Jamie DePolo: We’ve touched a little bit on this, but there’re so many specific areas under the topic of sexual health and intimacy that we could talk about. And we’re hoping that we can get you back to do more podcasts, so today we’re just going to focus on some high-level stuff and give women, hopefully, some tips that can help them. So I was hoping to focus on sort of a couple of areas. And one that you were talking about just now was libido and desire; another, vaginal dryness and pain; and then intimacy and communicating needs. I think we have a whole Discussion Board that’s called I Want My Mojo Back! that’s talking about libido, and the loss of libido, and what a woman can do. So do you have specific tips for women who come to you, say, “You know, I just am not feeling it, what can I do?”
Sage Bolte: So I think, one, you made the statement “loss of libido,” and it triggered in my mind — I think just to normalize, so much of advanced disease is grief and loss and redefining self and there’s a lot of that that happens in a lot of areas of life. And sexual health is no different. So I think it’s important for everybody to give permission to grieve the loss as “that was” and then to redefine the “what can be.” And so with libido, I want my mojo back, one of the expectations a lot of us have, even older women, is that my body is just going to want it. And if my body doesn’t want it, that means I don’t want it or I’ve lost my libido. So redefining the expectation that libido starts in your head, interest and desire start in your brain, and for the majority of women that hasn’t been impacted. So it is giving yourself permission to be sexual again, number one, and giving yourself permission to be sexual in a body that may be different and respond different. And then using what makes you aroused, what gets you aroused, what gets you interested throughout the day and in your own brain. So if fantasizing about a warm beach and feeling strong and healthy and touched and desired is something that starts to make your heart race a little and bring your libido up, great. If fantasizing about a warm bath and gentle massage gets your interest in being touched going, great. So libido is really about desire in our brain, and as we get older it’s more important and more important to redefine body expectations to brain expectations and what our brain can help our body do, so that also helps. If you want to be sexually intimate with your partner or yourself, thinking ahead of, “What are the things that I need to put in place to make that a pleasurable experience?” So sometimes fantasizing can help because you’re thinking about it through the day, your body’s getting permission to be sexual, your body is getting the cues from your brain that it is a sexual being. And so when you go to be sexual with yourself or a partner, it is more pleasurable and it doesn’t take as long to kind of get the juices flowing, if you will.
So the statement “I want my mojo back,” I so wish I had a little potion that would make you feel 27 again, or 35 again, or 45 again, but I don’t! And so I think even just the idea of getting mojo back, and “I’m going to take control by taking control of what I put in my thoughts,” that’s how you start to get your libido back. But it is not going to be, necessarily, a physiological desire initially.
A lot of times it starts with our brain and the thoughts that we put in our brain. And then you’ll be amazed that taking those steps — if I desire desire, if I think about things that are arousing, if I put things and tools in place that help arousal — so clitoral heightening creams, use of vibrators, exploring other kinds of sensual touch, allowing my body to get things that bring it pleasure — will also help with libido. And there is a statement of truth that says “use it or lose it” or “the more you do it the more you want it.” There is truth to that. The more your body receives satisfaction and pleasure, the more it’s going to want that pleasure, and the easier it’s going to be for that pleasure to come and be maintained, as well.
Jamie DePolo: Those are some very good tips. Now, there’s also the issue of vaginal dryness and pain. And I know some of the treatments obviously contribute to that. I know you’ve recommended moisturizers, different things. Besides products, are there other things women can do?
Sage Bolte: So with vaginal issues related to dryness, pain, atrophy, all of those, other than again, thinking of an assessment by your GYN, which I think is really critical to just have a baseline understanding of what physiologically is happening — I think sometimes we make assumptions about what’s happening based on the changes we feel physiologically, and so there may be options that hadn’t necessarily been considered. For some women, using localized hormone therapy is an option, like Vagifem or the Estring ring. For some women Osphena is an option. So again, some localized treatments that can sometimes be options. Pelvic floor therapists are physical therapists that specialize in pelvic floor rehabilitation and truly are amazing human beings. They do some of the most intimate work that has created some of the best results that I’ve seen for a lot of women, including women living with advanced disease, where they will teach them dilator therapy, they will help with pelvic therapy and rehabilitation for… again, looking and assessing to see if there are other moisturizers or treatments that can be used, and then teach them stretch and strengthening techniques that can help, also, with sexual satisfaction.
And there is some literature out there now on a treatment called the Mona Lisa Treatment that is essentially intravaginal laser therapy that helps with rebuilding the collagen. And I’m not a physician so I can’t speak to all the things it does, but I have had women explore that as kind of a last resort and has had really good success with it. But again, that would come from a discussion and a dialog between your GYN and your medical oncologist to see what approach can be personally tailored for you. And there are a lot of things that can be personally tailored.
And the classic response to, “What do I do about vaginal pain other than go to my physicians and the experts that know these areas” would also be stretch, strengthen, and moisturize. So, dilators can be a really important tool for sexual health and maintenance of sexual health, especially if you’re not having intercourse regularly. If you’re not using dilators and you’re comfortable with and it fits within your cultural and religious values to use a vibrator that you insert into the vagina, that can be replaced instead of the dilator.
So that’s stretching, and then strengthening is the Kegel, or Kegel exercises, so squeezing that pelvic floor muscle tightly around the dilator or dildo or vibrator. That can help with strengthening, and that helps with incontinence, that helps with managing, helping to improve orgasm, and again, the strengthening of the vaginal wall and tissue floor.
And then moisturizing… a lot of women use lubricants, which is helpful for the vulva and the vagina when you’re having intercourse. But moisturizer is different, and moisturizer really helps with maintaining the tissue of the vagina and of the vulva so that again, the tissue is less thin and/or less dry.
So those are the kind of basic sum-it-up tips that I might say. I also think you can make an appointment with a sex therapist if you’re really struggling with how any of this feels or fits. Also, one last tip would be blood flow is really helpful, and so blood flow to the tissue is also really helpful, so whether that’s through masturbation, whether that’s through oral sex, whether that’s through manual manipulation from a partner or a toy or a vibrator. Blood flow is really helpful and can be helpful, again, in aiding with the healing of any kind of tissue including the vaginal tissue.
Jamie DePolo: Okay, great. Those are some very good tips I think will be helpful. And then the last topic for today is talking about intimacy and sexual health, communicating your needs to a partner or even to yourself. I know intimacy can mean a lot of different things to different people, so how does a woman give herself permission or even come up with a new definition if the old one isn’t working and she’s not satisfied?
Sage Bolte: I would say communication is really critical. If she’s finding — and again, we might define intimacy as sexual intimacy, we might define intimacy as emotional intimacy. Intimacy may be the closeness with another person. And I want to be clear, there are lots of women who have great sex lives who don’t necessarily have emotional or sexual intimacy with their sexual partner. It might just be someone they have great sex with. However, for a lot of women, that emotional intimacy and that sexual intimacy is important to the enjoyment of intercourse and also just intimacy in general. Remove sexual ideas with it but the closeness, the connectedness to other humans is really important for us as humans. So whether that’s your close girlfriends or your close guy friends, having the connection to another human being can also be affirming to who you are and that can help us with our intimacy, with ourselves or connecting to ourselves.
So when we’re thinking about redefining it, in a coupleship it might mean that you used to go mountain bike riding and that was the thing you did together, and now because of just the energy level or maybe your body is not capable of mountain biking, having a conversation about, “What are the things we can do to maintain intimacy, to maintain that connection?” And maybe it’s, you go swimming together if you were active before, maybe it’s taking a walk, or maybe it’s as simple as setting a date out and watching a movie, and instead of sitting across from each other on the couch, cuddle up and sit next to each other on the couch.
Maybe it’s turning the TV off and sitting with music on and massaging each other’s feet. Maybe it is having an intimate conversation about hard things, about things like, “I don’t know what this life means for me right now and I need help in defining what brings me joy.” That can be a powerful and intimate conversation with a partner or a best friend as well. So intimacy may have, again, looked like something very different than what it can now due to physical limitations or even cognitive limitations. Sometimes just the fatigue can impact that. So having conversations about what are your needs now and then also making clear to your friends and family and partner that, “My needs now are this but they may change. So right now what I need for you is for you to come and initiate physical intimacy or sexual intimacy, and I am willing to keep trying that. But that may be different in a week from now. And so if I say not now, I’m not turning you down forever, just we need to revisit this conversation.” And then being able to communicate what those needs are. “I like it when you touch me. I like it when you pull me close. I like it when you hold me. I don’t hurt when we use this position.”
That is really critical in a coupleship because again, oftentimes the partners are left guessing. And if they’ve created pain once before, typically partners aren’t really looking to create pain again, so they either avoid or the topic gets avoided. And so giving permission to go back to that conversation and talk about what their intimate needs are is really important.
And to be fair, it’s also really important to ask the partner or partners what their intimate needs are, and if they can’t be met by you, how do you strike up a conversation about what are the other options for their intimate needs to be met? And I’m not suggesting that they go out and find another sexual partner, but what else can be done? Again, is it giving them permission to have more engagements out with friends? Is it being able to masturbate next to you while holding your hand? Again, it goes back to dialogue and conversations, and I know for many people these are not necessarily comfortable conversations, but they are critical conversations to quality of life.
Jamie DePolo: One last question. These conversations are so important, and if somebody is not comfortable starting one or has never even had one, do you have any tips like what’s a good way to even start or to get your mind around bringing up this subject?
Sage Bolte: With a big bottle of wine. Totally kidding! So it’s a great question, and it’s kind of a loaded question because it so depends on the individual. My next question would be, is that because within their cultural or religious values it wouldn’t be appropriate to have these kinds of conversations? And if that’s the case, I would advise them to go to their cultural/religious leader and have a conversation with them about, “What can I do, I’m feeling like my needs aren’t being met or my partner’s needs aren’t being met, and I’m not sure how to have these conversations within the context of our belief system?” So religious leaders can be helpful.
Seeing a therapist can be a great space to initiate those conversations, and there are lots of oncology social workers that are certified in oncology social work who are available at many, many community hospitals, and that could create the opportunity to at least initiate the conversation.
Sometimes it’s the nonverbal thing, so there are some women who I’ve worked with who have bought the book Woman Cancer Sex by Anne Katz. That’s a great book. She’s an amazing nurse who’s done great work in sexuality and intimacy. And they’ve bought those books and highlighted and circled certain areas that they relate to and then stick it by their partner’s nightstand or give it to their partner. There are other nonverbal ways to do it like, again, some are through the books, through listening to the podcast together.
There’s another book, Sex Matters for Women. That is a general non-cancer book that’s also a great tool that can strike up conversations. Sometimes you can approach it through kind of a back door of, “I’ve noticed my body has really changed through these treatments, and I’m also noticing that there are things that hurt on me, even the other day you came to hug me and I kind of shrugged. And I’m not shrugging because I don’t want to be touched, I’m shrugging because I notice that my shoulder was hurting or my back was hurting, and I really want to be touched, I miss touch, how can we have a conversation about touch?”
And just again, keeping it more focused on less threatening words. Sex, intercourse seems to be really big conversations, where if the conversation is more about, “I want us to feel connected, what are some ways that we can get creative on feeling connected if we can’t have intercourse.” And certainly, again, there are a lot of very happy single people who don’t necessarily have intercourse with someone. There are a lot of happy couples that don’t have intercourse that find ways to connect in intimate ways. Again, sometimes just laying together being naked is the most powerful and intimate connection.
So dialoguing about it through touch or intimacy can be a less threatening way, and again, I would say if you’re still struggling, seeing a counselor or a therapist or the social worker in your institution is another great way to start. Or ask the nurse who treats you,”Do you have any booklets or tips?” And sometimes, again, using a healthcare professional, the healthcare professional can bring it up in conversation with you and your partner to kind of normalize it, and then it’s an easy beginning.
Jamie DePolo: Great. Sage, thank you so much. We really appreciate your time. This has been so helpful, and we hope to have you back very soon. Thanks.
Sage Bolte: You are so welcome.